22-Year-Old Kanhaiya Showed Me How Little I Knew About Pain And Disability

Posted on September 15, 2016 in Disability Rights, Staff Picks

By Abhay Chawla

He would come and quietly wait outside the house, sometimes for hours. As he couldn’t walk, there was no way for him to come to the gate and ring the doorbell. As he couldn’t speak properly, it was impossible for him to call out for me. I would get to know about him, only if for some reason I opened the door, or somebody came to meet me at the gate, and I needed to go out. Then upon seeing me, he would beam his thirty-two carat smile and try to fold his hands to do a namaste.

I had always thought I understood the anguish associated with physical disability, but interacting with him made me realise I was only scratching the surface. This became evident in my first interaction with him. I clearly remember the afternoon when, as I parked my car in the driveway and started to walk inside, I saw him sitting on his tricycle looking at me with eyes that had in them a mix of sadness and expectation.

Do you want something, I asked? He nodded. Do you want to eat, I asked? He nodded again. So I went inside and got two chapattis and some subji in an envelope and handed it over to him. As he moved his hands to take the packet from me, I realised he had no motor coordination and what seems easy for most of us, holding food and putting it in our mouths, was a very complicated task for him. I kicked myself mentally for not realising this, took the packet from him and made two rolls of the chapattis with the subji inside. This arrangement was easier for him to handle, and in due course, he was able to eat.

As per a local Gurgaon civil hospital medical board’s certificate, Kanhaiya (he even has a tattoo of his name on his arm) was suffering from something called Spinocerebellar ataxia (SCA), also known as Spinocerebellar atrophy or Spinocerebellar degeneration.

The SCA is a progressive, degenerative, genetic disease with multiple types, each of which could be considered a disease in its own right. He is 22 years old and has an elder brother, who’s 27 years old and suffering from the same disease. Both are homeless and live in a jhuggi or temporary hutment in Gurgaon.

From that first interaction, Kanhaiya has been regularly visiting me and has given me an opportunity to take a peek into his world. He can’t talk the way normal people do, but he uses various means to communicate with me including actions and emotions.

His hearing faculty is fine so; he can understand my words and instructions. When he found me sympathetic and also responsive to his wishes, he went further.

One day, within our first few meetings, he expressed a desire for a transistor. That was easy, with the help of a friend I arranged a transistor. This action helped build a certain amount of confidence in our relationship. His communication became more personalised – he would talk about routine medical issues, his concerns and the events in his day. From his brother’s neck pain to acidity, to the fever of his fellow jhuggi dwellers – he wanted to communicate everything, and I, in turn, tried to help him with over-the-counter medicines and lend an ear.

I am not sure, but the confidence with which he asked me for medicines gave me a feeling he thought I was a doctor, which I am, but not the medical kind.

His conversations also included events which he considered important to him, like the story of his tricycle hitting a car and breaking its side view mirror. The story was told to me in all seriousness, but I dismissed it by saying “so what, it’s okay and accidents do happen, and things are fine as long as nobody gets injured.”

On seeing my dismissive attitude, he started to laugh too. Another day, he wanted to talk about his mother who is also disabled. As he started talking about her, he began to sob, and I was at a loss on how to console him. His mother also stays in Gurgaon, but not with him – she lives with her sister.

I have often pondered the difficulties a physically challenged person faces as they go through life, especially when as a society, we are highly insensitive to physically challenged individuals. Even though he has been living in Gurgaon for over a decade, he still doesn’t have a disability pension, and his ration card was made only a year back, things that every government promises as a part of its developmental agenda. Then, of course, there are the innumerable forms to be filled, affidavits made and officials to be visited, sitting in offices which are most not physically challenged friendly.

Kanhaiya sits astride his tricycle every day and cycles a few kilometers to live on the generosity of some strangers to sustain his body and mind with food, clothes and maybe some money.

I had initiated the process of getting him and his brother, a disability pension in January 2016. Even though the government records this month show his name as a disability pensioner he still hasn’t got a pension due to confusion about an account opening.

Meanwhile Kanhaiya has been evicted from his temporary jhuggi and has been moved to a different location which I am still not aware of.

He hasn’t come to my house in many days, but I hope very soon that he might receive some few hundred rupees which constitute a disability pension while the netas and babus spend crores on foreign jaunts.